The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=10&m=3901687
Posted By : Lisabeans - 8/22/2017 2:24 PM
I will try to keep this short. Been having joint and muscle pain for the past 3 years. Symptoms: positive Ana, joint swelling, pain in joints and muscles, hair loss, mouth ulcers that come and go, dry eye. Rheumatologist says it is inflammatory since I responded well to prednisone. After almost 3 years with him and not a real diagnosis, I went to Penn University hospital for a second opinion. She says that since all other blood tests are negative, it is fibro. She made me stop arava (which did give me some relief) and increased amitriptyline. I also started aqua therapy. I am in so much pain now. It is almost 6 weeks off the arava. Second rheumy says to give it more time. Now I did read that ra can cause bunions. I did have a bunion removed about 8 years ago since it was real painful. Found out my grandmother and most of her side of the family had bunions too. Plus my toes have never been real straight. My grandmother ask I had crooked fingers. Do you think I may have ra? I feel like a hamster running circles in a wheel and getting no where.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : Alice22 - 8/22/2017 11:30 PM
You can have bunions without having RA so that's not a reliable indicator. Is the joint pain symmetrical? That is supposed to be an indicator of RA - ie, pain in both wrists, feet, fingers, shoulders, etc. I don't like that you are in so much pain and your doctor's response is to "give it more time." That wouldn't sit well with me. I'd tell her, I don't WANT to give it more time, I want something for my pain right now. Just because she's a doctor at Penn University hospital doesn't automatically make her a good doctor! She might be but she's not taking very good care of you right now and that's what matters. I hate to say see a third doctor but if she doesn't help you, maybe that's what you should do. Do you know what tests you were given? Here's a link to the different tests, and information (scroll down on the page) on the Vectra test. That has several biomarkers that measure disease activity. Here's the link:

http://theraconnection.com/diagnosis/how-is-rheumatoid-arthritis-diagnosed/

Good luck and be persistent until you feel confident in what your doctor is telling/doing for you.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me sick. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms, and turmeric, krill oil, and Methyl B12 daily.

Posted By : straydog - 8/23/2017 7:32 AM
Lisa, I think you really need to consider seeing another rheumatologist with current testing. I would consult with a dr that treats RA patients too. Get on the internet & look for someone in your area. No one test is used to diagnose RA, its various tests to rule out other issues. A positive ANA is not enough to make a diagnosis. People can have false positives & it happens a lot. Even with a positive ANA it can mean nothing. The blood panels checking ERS, CRP & other blood test they look at, along with xrays to check for joint damage. They can do plain film xrays, MRI's & ultrasounds of the joints of the hands & joints in the toes & feet as it hit the small joints. Just my thoughts, I would have been concerned with a dr saying I have RA based on a positive ANA, because that alone is just not enough to dx a person. I urge you to go to some reputable websites, such as the Mayo Clinic or NIH & read up on how RA is dx'd & the symptoms. Just had another thought, does your drs have a patient portal where you can go in & print off test results? If so, you can get your records that way.

I know one dr said its Fibro, it could be. I see you have UC, this can cause the mouth ulcers. I have had more than my fair share of those even when not in a flair. Dry eyes think about seeing an ophthalmologist for that.

I know you are miserable but I think you need to get another opinion especially with two drs being in conflict.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 8/23/2017 8:23:48 AM (GMT-6)


Posted By : Lisabeans - 8/23/2017 8:37 AM
Thanks Susie. My GI and first rheumotologist do not feel like my UC is causing any of my symptoms since it is in remission. I even went for a colonoscopy again to make sure. I went to Penn Medicine since they were listed on the lupus.org site as very knowledgeable in treating ai issues. I am considering going for a third opinion. My first rheumotologist was leaning towards a ra diagnosis but never formally gave me a diagnosis. All my labs except the ana are normal. He is basing it on symptoms. I have symmetrical pain and swelling. I see an eye doctor once a year. She is the one who diagnosed my dry eye. The doctors at Penn have made a few comments that did not sit well with me. One was if you were getting some relief with your current doctor, why are you here? Plus they keep saying they don't treat fibro patients. Then she said that she will prescribe me any ra medications since she does not think I have it and I am free to go to someone else if that is what I want. No bedside manner at all!!!!! I don't want drugs, I just want to really know what is going on with me. How can 2 doctors feel so differently? Now my legs and feet are getting pins and needles feeling along with the swelling. My right leg is worse. It feels 20lbs heavier than it should be and is sort of numb (like the novacane feeling) and it feels like ants are crawling up and down my leg. My knees are horrible. Hurt me so much last night that I could not sleep (we also had a heavy rain storm last night). I know you all understand the frustration. I know my old me will never be back, but I would like some more good days than bad.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : straydog - 8/23/2017 11:42 AM
Lisa, yes when trying to nail down possible AI's diseases, conflict between two drs is common. HW has forums filled with posts over drs not agreeing on a dx with a patient. This comes up frequently with people in the CP forum that has had surgery recommended, difference of opinions. Thats why its important to get that 3rd opinion. It can be a very long road to start down that path. In many different type of AI's the symptoms can mimic other things not related, so then starts the process of elimination. If you want to find out if you have RA, get yourself into a new rheummie. Someone that will do a proper eval with any testing needed, if your current testing is not up to date. I still urge you to check out RA on the Mayo Clinic's website & read up about symptoms & dxing it.

I have dry eyes, the eye dr recommended OTC drops with the stipulation of if they didn't work she could rx drops. Did your dr do this with you?

Don't give up on feeling good again, instead look towards finding out what is going on. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Lisabeans - 8/23/2017 11:58 AM
Thanks. I do have otc drops which help a little. All my labs are from 2015-present. They didn't recheck Ana or antidsa . The only xray I have gotten is of my knees. She said it came back fine.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : straydog - 8/23/2017 4:27 PM
Lisa, I went through 5 gi's drs to find one that would not put me on steroids for crohns. That is so old school, not to mention I cannot handle it because I go into congestive heart failure. Number 5 was a gem, he understood the CHF issues & adrenal issues from long term use of steroids. There was much better & newer medications to treat it.

Moral of my story is not all drs including specialists think the same. I think specialists are more quirky than any of them, lol.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : celebrate life - 8/24/2017 1:47 AM
Hi Lisa,
Such a sad common story. It seems easier to get a neurosurgeon to remove a brain tumor than get a rheumatologist that will give the proper tests to get to the RA dx. My worst pain and swelling before dx was in my knees, like yours. I have never had an xray show anything, other than when I broke my wrist. It has to be an MRI to see the damage being done to the sonovium. But mostly, you just need the right meds, and all the time in the world won't change that. Maybe you don't have RA, but if you do, it sounds like you aren't going to get any help with a dx from where your at now. Sorry you are going to have to live with pain until you find the right doc. But eventually it will get better. Persevere my dear!
Beth

Posted By : Lisabeans - 9/7/2017 9:15 AM
Thanks. I went back to the Penn doctor yesterday for a follow up. I have developed little bumps on the outside of my thumbs near where it bends. It is hard (almost feels like a bone) and does hurt a bit. She said it could be oa. Did an xray on the thumbs and it looks fine. She said next step if it still hurts is an ultrasound. I also told her my GI wants me on something to keep the UC in remission. She said she won't prescribe anything but suggested I try humara from the GI. I started the arava again from my last rheumy and feel a bit better pain wise.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : BadDay - 9/9/2017 9:53 PM
Hi Lisa Those little bumps sound like Rheumatoid Nodules Really if you can Get to a Good Rheumatologist even if you need 10 different opinions keep at it ,
has anyone tested your RF Rheumatoid Factor ?
as ANA is more typical in Lupus ect you can have RA without a positive ana
you Need to get pain relief sorted can your local Doctor prescribe you something? also RA responds better the Earlier it is treated so if you Do have it then you would want to be on something like Arava or other disease modifiers.
I Know it is So hard but its Your Body & You Know if its not right so as Alice said; Just because she's a doctor at Penn University hospital doesn't automatically make her a good doctor.
can you reach out to your Local Arthritis support group to see if they can recommend any Good Rheumy's in your Area
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

Posted By : Lisabeans - 9/9/2017 10:40 PM
I am asking around for a 3rd rheumy. I did start taking the arava again. It definitely helps a bit. My pain is now between 6 and 8 on a scale of 10. I am also going to find a new primary doctor. I have had a ton of blood work drawn. I believe they tested for ra but it was negative. The Penn doctor says if I have anything inflammatory it is from my colitis. I don't agree. I have been in remission so long with that. Thanks for the advise. This site is amazing!
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer